Stories of brain cancer, starting with our own

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Finding the Poetry

A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. 😉

I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference.

Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess.

I also had a chance to go visit their daughter’s grave. They picked an amazing spot for her, and I could just feel the love there. Still… it just sucks to visit a child’s grave. I sat and talked with her for a minute about what her parents are doing so that other kids might not have to suffer the way she did. Addison was a fighter that defied the odds. I think she would be happy to know that her tumor got taken out, and hopefully what we learn from it will be used to fight some other child’s tumor.

As I visited with Addison, I listened to her wind chimes and the other sounds of nature there. I thought about how the world shows us poetry if we just stop to see it. Sometimes it is given to us in words, but many more times it is just the feeling you have inside. There aren’t always words to express the feelings we have. The love and the grief are just too big for words.

Addison’s parents let us us her as the “sponsor” for the first child to go on the upcoming clinical trial we are sponsoring, and because of their generous matching gift, we actually funded the first two kids onto the trial. That left me with coming up with a second sponsor person – someone that we can visualize as we fund the third spot on the trial for this unknown child.

And that’s when the day took a turn. You see, there are just so many families we know that have been touched by this disease. So I tried to narrow it down based on significant days to that family, and even that didn’t help! There was the anniversary of Ethan’s passing yesterday, Carter’s birthday today, and the anniversary of Jake’s passing today/tomorrow. (Yes, Jake is special and gets two days. More about that later. )

Most of these kids I never got to meet except through the broken-hearted words of their moms and dads. It’s the same for the adults with brain cancer. They leave behind shattered families who ache to have someone say their name. To know that they mattered and continue to matter.

We are funding this clinical trial to try and save lives, and for me, it is so special to connect the spots on the trial to these special brain cancer warriors. I hope it is special for their families, too.

We post about the progress pretty regularly on Facebook, so please join us there to see pictures of our sponsors and help us fund all 200 spots on the clinical trial. There are some really great stories to share with you as we go, and if you would like your loved one to be part of this movement, just let me know.

P.S. As for the rest of my day, I hope I got to spread a little sunshine into Carter’s family’s world, and I know that my brother and daughter spread a little into mine. I may have more to share on that later, too.